Family Support Campaign Hub
Family Support is the cornerstone of PWSA | USA.
Special announcement: Gifts made through May 31st can be DOUBLED thanks to donations from two anonymous donors. Donations to the Family Support Campaign will be matched dollar for dollar up to $20,000 through May 31st.
From those first days in the NICU, finding specialists and deciphering insurance claims, to sending your child off to school, navigating independence and adulthood, and the growing experiences of PWS in the later years of life, we are available every step of the way. We offer personal family support through our mentoring program, assistance with the IEP process as well as SSI and SSDI claims, trainings for schools and residential providers, connections and information on PWS specific providers, informative webinars, community-engaging conferences, a blog that focuses on the variety of PWS experiences, and a 24-hour crisis hotline. We are honored to be here for your family and the rest of the PWS community. On April 1, 2024, we will begin taking donations for our Family Support Campaign. Please consider making a gift through May 31st so we can continue to be a source of Help and Hope to our community.
Reasons to Call PWSA | USA
PWSA | USA's Family Support team is here for you and your family 24 hours a day, 7 days a week, 365 days a year. If you are in need of assistance, please call (941) 312-0400 or email info@pwsausa.org.
“PWSA | USA was our rainbow after the storm of diagnosis. Providing us with all the latest information available so we can better understand PWS. Knowledge of what is possible is the beginning of a journey filled with hope. PWSA | USA’s family support team came to meet us at the NICU and provided us with support and knowledge of all the things our daughter will and can do. They gave us much needed HOPE. Being a PWS parent doesn’t come with a manual but it comes with the PWSA | USA family support team. PWSA | USA’s family support group helped us find providers in our area. Life sent us on a strong path but also provided us with strong shoes. Walking this PWS journey has not been easy but PWSA | USA’s family support team has been our strong shoes. They walked us through the process of navigating and understanding the entire IEP process.”
– Sue, mom to Shealynn (4) (NJ)
“The PWSA Family Support team has helped us every step of the way! At the beginning, we were reached out to and given so many answers to too many questions to count. Whenever I panic about what is going on with my daughter, they are there to help and make me feel like I am not alone. I am truly blessed for us to have the support that’s there, especially when the rest of the world doesn’t know about PWS.”
– Kebra, mom to Saphira (2) (OH)
“PWSA | USA’s Family Support team gave me two angels on earth as parent mentors who helped me believe it really was going to to be alright. PWSA | USA’s Family Support team helped me feel confident and level-headed in a difficult IEP meeting.”
– Jennifer, mom to Josephine (7) (MN)
“We have always been so thankful for the resources provided by PWSA | USA – the old Gathered View newsletter, the brochures and books, the Medical Alert booklet, and more recently, things like the GI algorithm. The people at PWSA | USA were so helpful when James was initially denied for SS benefits, for example. Practical, useful tools that make such a big difference. Donating is such a small thing that we can do to make sure PWSA | USA is there for other families as well.”
– Elaine, mom to James (37) (NH)
“Our first contact with the Association came at a time of great angst for our entire family. Throughout my 19 year history in various roles with PWSA | USA, I found needed support and a need to “give back” to others some of the gifts afforded to me.”
– Stephen, grandparent to Joslyn (FL)
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.